I was diagnosed with neurobpastoma as a baby and had a kidney removed. Then at 17, I was diagnosed with GIST. I’m 35 now and still battling with GIST. I have gone thru surgery, study meds, oral chemo, introvenious chemo, radiation, and naturopathic methods as well. I’ve just been told my chemo has stopped working. My new options are introvenious chemo, which in the past has shown not to work and there is no study that it will, Or immunotherapy, which I can get gout or immunodeficiency and the fix is a lot of steroids. I am not a fan of steroids because I used to be 200 lbs and I am very bodily conscience and do not want to put on all that weight again. I just feel so stuck. We were hoping to hold out for this new drug called “BLUE”. I don’t know anything about it but the doctor is really excited about it, but it is not available in our area yet.
I decided to do the adult make a wish and also fill out the five wishes. I am not saying I’m dying but my counselor wanted me to fill it out. I shouldn’t even be alive this long. I have 13 tumors, and when I was diagnosed, I was told I had paraglimoa which is related to my neuroblastoma. It that would have killed me right away. God gave me a second chance giving me this cancer. I was told when I was diagnosed that this cancer in 1997 was for African American men 40-50 years old. It is more spread out now but pediatric type is still rare and is harder to treat and is usually only death or chronic. If u get it older, it is more curable or chronic, rarely death.
I am an artist and use how I am feeling, to create my art. I do not have a lot of friends because when they hear I have cancer, how may rumors I have and how long I’ve been battling it, they usually don’t stay too long. But I’m close with my mom. And my artwork...and tv ;). I guess that is about it for now